Time to make palliative care choice commitment a reality

Together for Short Lives has broadly welcomed an important new government commitment which states that children and young people in England with the most complex needs should be able to live their lives as they and their parents wish. But we warn that to make sure real choice in palliative care is there for children and families it needs dedicated and sustainable funding and an experienced specialist workforce. We are now calling on commissioners and providers to work with us to make this ambition a reality for the 40,000 children and young people in England with life-shortening conditions.

The new commitment is included in the government’s response to a review of choice in end of life care which was commissioned by ministers and carried out by the National Council for Palliative Care between 2014 and 2015. Crucially, the government states that:

  • to support high quality personalised care for children and young people, commissioners and providers of services must prioritise children's palliative care in their strategic planning; this is so that services can work together seamlessly and advance care planning can be shared and acted upon.
  • children and young people with complex needs should enjoy the same independence and choice which we all expect. 
  • it is essential that the voices of children and young people are heard so that they are involved in their care, able to express their needs and preferences and make informed choices about their care.

The good news is that ministers recognise:

  • Important differences between palliative care needed by children and adults;
  • Increasing number of young people with life-shortening conditions who are living into adulthood;
  • The challenges which those planning and funding children’s palliative care face as a result of the relatively small numbers of children, young people and families who need it.

The government’s commitment also sets out the range of services which children and young people with life-shortening conditions rely on from diagnosis until the end of their lives. It highlights the role of a range of services, including children’s hospices; community children’s nursing services; paediatric inpatient services, specialist palliative care consultant teams; GPs; and the wider network of supporting services such as school services.

The government has also explicitly recognised the role that Together for Short Lives has in securing joined-up palliative care for children and young people alongside other voluntary sector organisations. 

In response, Barbara Gelb OBE, Chief Executive of Together for Short Lives said:

 “It’s good news to see the government’s commitment to giving children and young people with life-shortening conditions the choices that they deserve. I commend the Minister’s decision to extend this new palliative and end of life care commitment to people of all ages. Sadly, too many families struggle to get the 24/7 palliative care they need and don’t have real choice in where their care is delivered. We now have the opportunity to change this.

“The hard work to turn this commitment into a reality for families starts now. Coupled with last week’s draft NICE guideline on children’s palliative care, there is a compelling argument that those who plan, fund and provide health and social care must work together to deliver the joined-up support that these vulnerable children and families need.

“I am very clear that there is still much more to do. We are still failing young people. The government needs to set out how young people with life-shortening conditions can experience smoother transitions to adult services.

“Importantly, we cannot make this choice a reality for children and young people unless it is matched by sustainable funding and a skilled and experienced workforce. This will be the acid test - we owe it to children and families whose time is short not to let this vital opportunity go to waste.”

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